IMPACT OF AUTISM AWARENESS CAMPAIGNES

EFFORTS OF A DECADE

“THE ROAD FROM ALIENATION TO ACCEPTANCE GOES THROUGH A BRIDGE CALLED AWARENESS”….. A PARENT

I have been a parent professional in the field of disability since 1993. The path I chose and walked had many ups and downs but I never regretted it. The following account is a summary of my observations of past one decade and it is mostly associated with India.
SCENARIO – A DECADE BACK
Autism was seen as

• A stigma/shame/disgrace by all families.
• A difficult to condition to deal with.
• A curse to a family.
• Not a disability but a disease with no treatment.
• A late or delayed diagnosis by professionals as they were hardly aware of the condition and its related ailments.
• A cause of bad parenting; calling mother a refrigerator and father a pendent in early 1940’s
• A condition where afflicted are non-educable or untrainable

SCENARIO AFTER A DECADE OF AWARENESS CAMPAIGNS IN INDIA

• Recognition as a disability- It has been recognized by the Govt of India as a disability and has been included in the RPWD Act of 2016. This was achieved on December 28th, 2016.
• Parent Support Groups- Parent movements as support groups and NGO’s played a significant role; as pressure group, they have been advocating the life span issues of the condition and that these afflicted persons require continued social support.
• Acceptance- Society and the extended families have begun to understand the critical issues of the condition and acceptance level is much higher than before but all these have been possible for those families where they discuss the problem openly.
• Prevention & Diagnostics – The cause as one cause is not yet known; researchers from across the world suggest multiple causes right from genetics to environmental and thus
  prevention has not been possible. A few families where is an already prevalence of autism in the family, can be advised if they are planning a second child. Diagnosis – Still delayed in urban areas undiagnosed in Rural, but the scene is better.
• Education and Therapies – Autism has been portrayed by professionals as a difficult condition and to deal with the condition there have been several therapies developed. Some of these do not have enough evidences to prove the outcome. The professionals too have made this into a business and the present scene is sad. Most of these therapies show qualitative results; the latter are not visible in a child unless tried for a long time. These are completely unaffordable by the parents and so far are not covered under any insurance schemes. Parents have been manipulated, sent from one place to another to avail these therapies.

Yes, there are some insurance related schemes, Nirmaya started but this addresses only the health related issues. In the recent past LIC too has come up with a scheme.

The irony is the existence of unawareness about the schemes among the stake holders, especially in the rural or semi urban areas of the country. All these years, to avail these one needed a disability certificate but Autism was never mentioned as a condition, it was accounted under Mental Retardation.
Education as inclusive education will remain a dream as we do not have trained teachers who are equipped to deal with Autism in a classroom of 30-40 kids. So far, the focus has been only until primary level of education middle and secondary levels in the recognized boards have been difficult. It is the time that

• We bring in special education as a subject in the regular B.Ed. Programme.
• We create special education programme with respect to teaching various subjects beyond pre primary and primary level; this will help fill the gaps in the education system and there will be continuity in education.
• It is time that we recognize this field as special field, where a professional needs a set of skills to deliver along with compassion.
• It is time that we develop scales for teachers, aided or unaided institution.
• It is time that the therapies available in the market are studied and rated for their efficacy.
• It is time that parent are empowered. So that we get results in multiples. Weall know that Education is the key to all doors.

Training: Since the field of education was never focused on, the training programs towards employment have been very weak where as training for occupation and sheltered employment has been in place. There have been some attempts made by parents where they could identify a few extraordinary abilities in their word and worked towards it.
These success stories have inspired other parents to do the same, therefore the scenario is much positive and we also notice that there is a strong inclination toward right brain related activities like art, music, drawing, and writing. Technology is another area which can very well be equated with Autism and it has been evident that kids with Autism can be trained in ICI based programs.

Employment – Until 2011, employment Scene in India was completely black, parents were still in denial and struggling with so called “Behavioral issues” which actually stem as Sensory Defensiveness toward environmental stimuli. Project Prayas of ASI could see it from a different perspective. A conducive environment was created to prevent Sensory Defensiveness and then the training was provided through computer. Some 80% of the Kids have shown strong interest in computer aided learning through www.learn4autism.com portal which is made available free to the world. This training has opened doors to employment and one such initiative was taken by SAP labs India Pvt Ltd in Bangalore. Now there are 17 persons with Autism @ work. The model of training incorporates soft skill training too.

Inspired by the above story, many corporates have come forward and hiring persons with ASD for tech based operations. To conclude, a lot of has happened in last decade of awareness but a lot more needs to be done. One needs to penetrate the rural India, do early diagnosis, more support from the government toward medical, educational, training and rehabilitation related activities. Standardize training methods and monitor them along with financial support.

Collaboration, Co-creation and Convergence among the stake holders will help persons with Autism get a dignified life.

Kavita Sharma
www.learn4autism.com

Secretary
The Serrendip